An Interview with Jane Gilbert
Former President and CEO - ALS Association

Gary Barg: Our family caregivers are
dealing with all sorts of healthcare
issues. But I find one of the most
challenging is when the caregiver’s
loved one is living with ALS, commonly
known as Lou Gehrig’s disease. Can you
tell me the importance of family
caregivers to people living with ALS and
what the Association does for them?

Jane Gilbert: We have a series of
recommendations that we certainly
provide for people who are newly
diagnosed. The thing that we recommend
they do as quickly as they can is get to
a certified center and start the process
of working with good qualified clinical
professional people who can really help
not only the person with the disease,
but their caregiver, as well. The
clinical support not only improves the
quality of life for the patient and
their family, but it also extends the
quality of life. We have 34 certified
centers across the United States and
many other clinics that we work with
that provide not only that support, but
also educational information.

You know, when someone is newly
diagnosed, there’s always that shock
factor of Oh, my gosh, now what? But
there are many, many opportunities for
people to get help from the ALS
Association and from other
organizations, as well, dealing with
ALS.

Gary Barg: We’ve been doing some work in
the magazine with the ATSDR’s National
ALS Registry Web site, the government
registry. Are there any clinical trials
showing any hope for advancement in
supporting this disease?

Jane Gilbert: We have great
anticipation—I guess that is the best
way to say it—that one of the clinical
trials now in place may provide some
help and some hope for those people
living with ALS. As you know, we provide
funding for researchers all over the
world, literally, who are working on
ALS. And there are a number of drugs
which are currently in trial and any
number of potential drugs that may come
to trial in the next year or so.

Gary Barg: We’re thrilled that the ALSA
chapters have joined us at our Fearless
Caregiver Conferences when we have them
in chapter cities. If you’re a
family caregiver with a loved one living
with ALS, and you go to a local chapter,
what would you expect? What kind of
support are you looking for? What do
they offer?

Jane Gilbert: The chapters across the
United States offer, number one, support
for the caregivers. There is that
emotional support of letting you know
you’re not in this alone. And most
people are not familiar with ALS.
So the first and most important factor
with the newly diagnosed person is the
educational component of letting them
know what help there is. Our chapters
offer respite care and educational
components. There are all kinds of loan
equipment, transportation opportunities,
and professionally facilitated support
groups that provide an opportunity to
share best practices. We have programs
on the Web once a month that deal with
specific areas of caregiving.

Gary Barg: Tell me about the value of
support groups for caregivers of people
living with ALS. Have you found that to
be a valuable tool?

Jane Gilbert: We find it’s just one of
the most valuable things there is in
support of those people, particularly
the caregivers. As you can imagine, this
is an exhausting process for the
caregiver. They learn best
practices, they hear about ways of
coping, they learn that they’re not in
this alone. And so we, all the time,
just get tremendous feedback from
support groups.

Obviously, they’re not for everybody.
But those people who attend the support
groups really do seem to have an
enhanced quality of life and certainly
feel as though they are getting a
tremendous amount of respectful help and
compassion from others who either are
going through the same thing they are or
are caregivers who have come back after
the death of their loved one. These
people will still maintain an active
role in the support group. And that’s
been an incredibly helpful component. I
hear every day from people who say this
support group is the best thing I could
have asked for.